‘I am not Alone,’ connecting Latino households with caregiving services

Front Edge Publishing is part of what has now become a nationwide network of journalists who are committed to publishing stories about caregiving solutions that could help communities nationwide.

Recently, the staff at the Democrat and Chronicle in Rochester, New York, reported on a new program in Southern California that connects caregivers from Latino households with services like respite care, training and support groups in Spanish.

The report says, in part:

The growing need to provide help is shown in a 2020 National Alliance for Caregiving and AARP report. It revealed Hispanic caregivers feel their role gives them a sense of purpose, but they have the fewest caregiving resources and information in comparison to other racial and ethnic groups.

The report also found Hispanic family caregivers are more likely to be in higher intensity situations—meaning they often provide more care—while struggling with lower incomes and often having poor or no health insurance.

The report also explains issues involved in trying to bring such a program to other communities.

 

Music we’ve loved all our lives can help to settle our souls in the end

Learn about the Inspiring Work of Certified Music Practitioners

‘Where words fail, music speaks.’
Hans Christian Andersen

EDITOR’s NOTE: As the worldwide pandemic has risen and fallen in 2021, we are receiving more columns from writers around the world about the challenges of aging, caregiving and the end of life. This week’s story comes from Lori Brady-Neuman, a retired school social worker who has been using her life-long skills, especially her talents as a musician, to bring music to hospice patients. That kind of work by Certified Music Practitioners has been growing nationwide, including at major teaching hospitals. In her story, Lori explains how she got involved in this work, which is distinctly different than the profession of music therapy—and she tells us how her music has touched the lives of families she has met.

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By LORI BRADY-NEUMAN
Contributing Writer

Looking back over the years, I recall that I have known loss and grief in many capacities. My Dad left our home when I was 8. My husband of 20 years left the marriage, and friends of mine have struggled with many loss issues. I realize that I have walked alongside grief in many aspects of my life, so choosing to sing to the dying became the ultimate way of befriending loss.

One set of experiences that led me along the path toward working in hospice was planning and singing at various funerals over the years. I remember a significant funeral in which I sang for a dear friend, Elizabeth who was in her thirties. The night before her death, I was at her hospital bed where we shared memories and prayer and Holy Communion.

Since my hands were both involved in playing the guitar, she reached out for my knee in a desire to touch me. I introduced her to a new piece of music, “The Lights of the City,” which she loved—and then asked me to sing it at the wake, the night before the funeral.

At the memorial service, I shared the story of having sung this song to Elizabeth the night before her death. I shared what she loved about the song, and that she wanted me to sing it as the final song because she wanted her friends and family to leave the service on a happy note. I told this story just before singing it. At the end of the song, no one moved. I walked over to Elizabeth’s mother who shared a comment Elizabeth might have made if she could: “That was really cool.” I quickly returned to the microphone and shared this comment with the mourners who knew those would indeed be her words. A chuckle ensued, and then they were able to let go of their frozen stance. It was an extremely moving moment. I knew then I wanted to sing to people as they left this world.

Certified Music Practitioners: Music for Healing and Transition

I learned from a friend, who knew about my desire to sing to the dying, about the organization, Music for Healing and Transition (MHTP). I applied and was accepted. (If you care to learn more about MHTP’s work and certification of music practitioners, here is a very helpful page you’ll want to read within the MHTP website that answers questions including the distinction between a CMP and a music therapist.)

I completed my training and earned my certification as a Certified Music Practitioner through The Music for Healing and Transition Program. My training included teaching presentations by staff, background on paradigms of healing, required reading, repertoire development along with extensive internship and supervised practicum. I was assigned a mentor and, at the end of the entire process, I took an extensive exam and was required to submit a vocal recording that demonstrated my knowledge of which categories of music to use for patients in situations such as chronically ill, critically ill or actively dying.

Within the overall program, I chose hospice as my practicum. I will never forget an exercise during my hospice training that was focused on the various aspects of “letting go.” One of my assignments was to think of a final person I couldn’t bear to leave. I have three children, and I was asked to choose one child from among the three, as the final person to say “good-bye” to. I can recall quietly crying and not wanting to finish the exercise—but I had to complete this writing assignment as part of my program. Even though it was an exercise in my training, the process still was wrenching. The experience was designed to help me understand a little better the agony that a dying person could be experiencing.

During my training, I also was surprised at the breadth of music I was encouraged to prepare. As I started this process, I had prepared spiritual music, assuming from my own personal preferences that I would want spiritual music during my dying days. However, I quickly learned that we only sing spiritual songs if the patient or family asks for that type of music. This was so startling to me, at first, that I considered leaving the program for a moment.

Then, I began to understand. Not everyone loves spiritual music. For many individuals and families, other kinds of music are far more meaningful. As my trainer explained this, I decided to stay and to broaden my repertoire. I am so glad I made that choice!

My next hurdle was dealing with the question: Do I have enough musical talent? Can I remember the words and chords to all the music I wanted to share? None of this detoured me. I was determined. Eventually, I realized that the music I most commonly play falls into three general groups: spiritual music and hymns; popular and folk songs, especially music like John Denver or traditional tunes like Shenandoah; and then music that actually is new to people but that winds up closely paralleling their journey. While that’s a lot of music, my son has loaded all of my guitar chords and lyrics onto an iPad for me, so my repertoire is very portable now.

One event that vividly stands out occurred during my internship. I had sung to a woman who had COPD. She had been struggling for some time, and was experiencing labored breathing. The nurses indicated she had been trying to let go for several days but just became so anxious and rigid that she couldn’t let the process unfold. Her son asked me to sing to her that day as he was aware that I had done so the day before, and that it had gone well.

The patient was using oxygen. She was breathing extremely hard, so much so that her false teeth had fallen out of her mouth. During my studies I learned the importance of mirroring the patient’s breathing musically as a sign of respect, which is what I did. And then to immediately transition the beat to a normal heartbeat pattern, 60 to 80 beats a minute. Her breathing entrained to my normal heartbeat and then her process of letting go began. While sharing music with her, her breathing diminished to 30 breaths a minute, to 20 breaths a minute, then 10, then her actual last breath. I followed her until there was no breath at all. Her son and her sister who came from Australia were in the room. Her son was holding her hand.

During the final 5 to 10 minutes, I was playing arrhymic music, often just a chord, or I plucked a string, no singing, only following her breath. It was a gentle, slow letting go that her body was trying to achieve. As an intern, the whole event was scary and awesome at the same moment. It was amazing to be able to help the patient unbind in her own time and manner and as she was ready.

The Benefits of Music for Patients

Live therapeutic music at the bedside has been shown to reduce a patient’s anxiety, fear, pain, anticipatory grief and restlessness and offer them a sense of calm, comfort and peace.

In doing a little research for this article, I found a log, which we were required to submit to our mentor and supervisor after visiting with each patient. It references a COPD patient, age 90, who had declined all medications, even Tylenol. This is the first time I had been with a patient who was suffering so. I felt enormously helpless. At one point I thought she didn’t want music, but a nurse came in and said to share the music anyway. She needed water and I summoned the hospice nurse for that.

At one point she started moaning: “Please save my soul.”

I responded by singing those words in a chant-like melody that I improvised. It seemed like she responded favorably to this. She definitely wanted me to sing and play. She was hallucinating, however, most of the time, so it was difficult to tell. I also sang a song and inserted her name in it. She noticed even though she was hard of hearing. I spent a long time with this patient trying to see what was right for her and trying to help her relax and
hopefully she would be able to sleep. When I was ready to leave her room, she seemed more relaxed, and even had closed her eyes.

I am reminded of another vignette of a family that I had been allowed to accompany on his final journey. I was  singing to a man in his seventies. He was pretty alert. His daughter was in the room with us. I started to sing “Swing Low, Sweet Chariot.” I invited the patient and his daughter to join if they wished. The patient, who died the following week, chose to sing with me. His daughter grabbed her smart phone and video taped the moment. It was truly special.

A week later, I received a call from the daughter letting me know her father had died and wanted my permission to show the video at his memorial service. I said: Yes, of course. It was well received and exactly what the family wanted.

Over the years, I have discovered that presence is more of a gift than musical excellence. I now understand this important gift. I experience the importance of presence every day that I volunteer at Capital Caring, Adler Center, in Aldie, Virginia, one day a week for the past 6 years.

Creating a healing environment through music

My goal as a music practitioner is to create a healing environment, a musical massage if you will. My ultimate goal is to help a person in transition as they unbind. The reason live music is more effective than recorded music is that the musician is able to make adjustments during the session depending on the patient’s mood, condition and breath.

Therapeutic music during the dying process is very effective at regulating breathing (as the person goes through the transitional stages of breathing until there is no breath), supporting relaxation, diminishing fear and anxiety, bringing family and loved ones closer together as they sit vigil, and adding a potent spiritual dimension to the event, regardless of religious affiliation. Music can help people relax and the voice can communicate a sense of healing and comfort. Since music is pure vibration, whether it’s from my voice or my guitar, it affects the body inside and out, mind and spirit.

I also find that the music has the potential of reducing feelings of isolation and fear. Music has the power to bring a fullness that words alone can’t create. I have seen the power of music reach deep inside of family members as they transform experiences of suffering into meaning.

I am also aware that the simple act of a stranger holding guitar and offering to share music, I am telling the person and family that someone is willing to sit with them for 30 to 60 minutes and share in their sorrow and feelings of loss. I am always aware that, even if the family chooses not to have me sing, they are always grateful that I offered to sing.

Before I begin each visit at Adler, I center myself. I ask God to work through me to help bring a sense of peace, comfort and calm. My intent is to be of service, not to entertain. I
am humbled and privileged to do this meaningful work. I often feel that I receive a greater gift than I give. While some Certified Music Practitioners are paid, I do all my work as a volunteer.

We play our music for those suffering with pain, anxiety and dementia to bring them comfort and a sense of belonging. The music can help release fears and attachments. It can provide us with beauty, warmth, light and hints that we are not alone. Music can help relieve stress and tension.

We also play our music for the dying because of our love and appreciation for life. The music provides a voice for this love. It is our hope that the music can accompany and journey with the person who is dying to ease their fears and surround them with a sense of beauty and blessing. The music conveys a sense of serenity and consolation that can be profoundly soothing.

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Care to read more?

Click the cover to visit the book’s Amazon page.

A dozen writers from around the world came together to create a resource for families who suddenly discover they are facing aging issues—and immediately need a helpful orientation to the new challenges opening up around them.

It’s called Now What? A Guide to the Gifts and Challenges of Aging.

Co-sponsored by a long list of nonprofit groups that work with aging Americans, this new resource book has chapters on issues that include:

  • Successful aging in place, which includes making our homes safe for us as we encounter physical changes.
  • Tips for smart dressing and accessories to make life easier.
  • Tips for new careers and also meaningful service we can provide to our communities as we age.
  • An introduction to services including financial planning and hospice.

“An amazing feature of this volume is its ability to address both caregivers and those in need of support, fellowship and aid to improve quality of life,” Robert J. Wicks, the author of many books about resilience, writes about this new book. “You will be so much better prepared to live a full life more sagely and enjoyably with less unnecessary worry, and guide others in the process as well.”

Elisa Di Benedetto: Celebrating Gifts of Aging with Positive Words and Images

This photo is from the new free-to-use database of positive images of aging, sponsored by the publicly funded UK nonprofit The Centre for Ageing Better. (Yes, in Britain, they retain the “e” in “ageing.”) This is just one of the free resources to encourage healthy aging that are listed in this story. This particular image is by photographer Peter Kindersley. This version is web-res, but you can find higher-res versions of these photos at the database, described below.

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Click on the cover to visit this book’s Amazon page. Elisa Di Benedetto is among a dozen writers who contributed to this non-profit book, designed to help families facing issues related to aging.

By ELISA Di BENEDETTO
Contributing Columnist

Over the next year, I will be sharing valuable resources I am finding through global networks of scholars, community leaders and journalists who are committed to improving media coverage of minorities, including: religious groups, especially at-risk minority faith communities; migrants and refugees; and the ever-growing “minorities” of elderly men and women in nations around the world.

One major commitment I have made, in cooperation with ReadTheSpirit online magazine, is participation in the newly launched Global Exchange on Religion in Society (GERIS), a European-Union-funded project through 2022 to encourage positive international conversations about diversity, coexistence and social inclusion.

Through 2022, GERIS is encouraging media professionals to work with scholars as well as community, nonprofit and religious leaders to promote awareness of these themes:

  • “The challenge of living together in a globalized world of highly diverse societies;
  • Positive experience of coexistence and inclusion, and shared citizenship;
  • Fostering pluralism and respect for diversity through education;
  • Challenge of being a minority;
  • Tolerance and respect for diversity as a solution;
  • Active citizenship, belonging and identity;
  • Harnessing opportunities for reconciliation and transitional justice.”

As GERIS participants are organizing their work in this summer of 2021, we don’t yet have a lot of public resources to share.

However—because of my overall work as an international partner in various journalistic efforts to protect at-risk minorities, I am sharing today a remarkable array of resources for encouraging positive perspectives on healthy aging.

Get involved in the Decade of Healthy Aging

This spring, as a journalist, I attended a virtual conference of professionals from around the world focused on the United Nations’ Decade of Health Aging. If you visit this UN home page, you will find:

  • A 7-minute YouTube video you can share that features “Leaders’ Voices,” messages from seven international leaders in this decade-long campaign. Because the video is hosted on YouTube, it’s easy to share with friends in small community gatherings or congregation-based groups to help spark discussion. (Here’s the direct YouTube link for that video.)
  • The complete Decade for Healthy Aging Plan in six languages, including English, Spanish and Arabic. Just scroll down on that UN Healthy Aging page (linked above) and you can select the language you prefer to download.
  • And, lots of other links, including one to learn more about how you and your community can get involved in the decade-long effort.

Resources for Positive Perspectives on Healthy Aging

At the United Nations conference I attended, a second treasure-trove of resources came from the World Health Organization. Here is the World Health Organization’s Combatting Ageism online portal. From this hub, you can branch out into dozens of other resources, including:

  • As an individual or a leader in a community group or nonprofit institution, you can share details of what you are doing overall on behalf of this global effort. You also can share details about specific events, including photos of those events that might inspire others. Just follow the two prominent links: Get Involved and Register Your Event.
  • Scroll down and you can choose to read the entire 200-page global report on ageism— or a shorter “executive summary” of the findings.
  • Are you active on social media? On that page, there’s also a link to a Social Media and Infographic Package that provides 19 easy-to-share images and fact boxes suitable for social media.
  • Eager to get involved? There’s a 22-page Toolkit for the Global Campaign to Combat Ageism available in English, French and Spanish. This is an all-in-one-PDF that combines elements of a “discussion guide,” a community-organizing strategy and lots of great ideas for communicators and group leaders. Then, if you are planning a dialogue or group discussion in your community, you will also want this 19-page Guide to Initiating a Conversation about Ageism.
  • Finally, if you’re a communicator like me, there’s a specialized 5-page Quick Guide to Avoid Ageism in Communication. This guide points out a number of ways our daily journalism—or our social media—can contribute to stereotyping older men and women. This 5-page “guide” not a rigid stylebook. Rather, it raises questions to consider. In other words: If you are a community leader, his little guide also could help you to spark a spirited discussion among your colleagues.

And, Best of all: Check Out These Free-to-Use Positive Photos of Aging Men and Women

I saved the best resource for last!

One of the toughest challenges for professional communicators is finding free-to-use photographs to illustrate the aging theme in blogs, columns, newsletters and other publications. Usually, professionals adapt to this challenge by making sure to take their own photographs, which they are then free to use.

Every day, however, countless communicators are searching online databases like Wikimedia Commons, and many others, looking for images they can use to illustrate news items, columns and helpful online presentations related to aging. If you have searched those databases, you know there are not a lot of good free-to-use photographic choices to illustrate aging in a neutral or positive way—and, worse, a lot of the available photos involve old people in some kind of crisis.

The UK-based, publicly funded nonprofit Centre for Ageing Better has tackled this challenge head on, funding lots of fresh stock photography. When I discovered this photo database, I described it to ReadTheSpirit Editor David Crumm as we met via Skype this week and his immediate response was one word: “Wow!”

Starting at this Photo Resource Search Page within the Centre for Ageing Better’s website, you’ll likely find yourself spending quite a bit of time discovering the incredible array of photographs that you are free to use. If you share nothing else in this column with friends, this new photo database is a real treasure for anyone who regularly works on professional media!

You’ll also find that the photo archivists are paying attention to gender, ethnic, racial and religious diversity. You’ll find people working, people in both outdoor and indoor settings, people riding on public transportation, people enjoying yoga in the park or talking in small groups. Because this is a British effort, you’ll find people who play cricket. There are a number of distinctive British gems in this treasure box.

This is an example of one of the multi-generational, cross-cultural photographs from the new Centre for Ageing Better photo database. If you click on this photograph, you will jump to the photo database’s search page. This particular group of photos is called “conversation on the street.” Type that phrase into the search box and you will see the various options, including this picture. You can choose from web-res or higher-res versions of this photo. This photograph is by David Tett.

Care to Read More?

Finally, here’s just one more reminder to check out the book to which I contributed along with a dozen other writers: Now What? A Guide to the Gifts and Challenges of Aging. The production of this book was a non-profit effort co-sponsored by a dozen U.S.-based nonprofit organizations that work with aging and at-risk communities. The book is a guide to dozens of the common challenges families face as their loved ones age. The best part of the book is that it takes a “strength-based” approach to this theme. That means, the book also emphasizes many gifts, strengths and creative ideas shared by elderly men and women.

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Elisa Di Benedetto is an internationally known journalist specializing in covering religious and cultural diversity as well as global migration and refugee issues. She is co-managing director and web editor of The International Association of Religion Journalists, a worldwide network of top journalists who cover religion. Elisa also is an active member in a number of other professional networks that promote best practices in covering minorities and at-risk populations. She contributed to the new book, “Now What? A Guide to the Gifts and Challenges of Aging.”

Native American caregiving for COVID ranges widely from tragedies to model public health responses

The 2021 Cherokee National Holiday, which will be celebrated from Sept. 2-5 this year, will follow public health guidelines. The multi-day festival always is aimed at celebrating Cherokee resiliency. Click on this logo to visit the official website for the Cherokee National Holiday.

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By DAVID CRUMM
Editor of ReadTheSpirit magazine

Indian leaders often refer to the original scale of their North American communities as “500 Nations”—and in the summer of 2021 they recognize that COVID responses have been as diverse as those cultural communities spread across this continent. Some tribes have experienced the tragic loss of Elders and little—or late—help from government agencies throughout 2020 and early 2021.

Other tribes have become models of public health response.

At their best, Native American leaders have demonstrated the strengths of truly caring communities. Here are some news stories about those efforts that you may have missed—reminders of the potential of Native wisdom and culture in the midst of a public health crisis.

Care to Read More?

Since our publishing house’s founding in 2007, we have worked with Native American writers and journalists to encourage their voices to be shared. Please, read this column in our Front Edge Publishing website that explains the two most important books we have published with Native American writers.

Rachel Pieh Jones: Gifts for those with cancer—and their caregivers

Rachel Pieh Jones in pink at the start of the inaugural Somaliland Marathon in which she placed second with the first Somali woman to attempt a marathon on her national soil.

EDITOR’s NOTE: Along with our ReadTheSpirit cover story about Rachel Pieh Jones’s 2021 book, Pillars, she gave us permission to reprint this caregiving column she wrote based on her own challenges with cancer.

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By RACHEL PIEH JONES
Author of Pillars

What to get the person in your life with everything, even tumors—a cancer gift guide.

Comfort and Warmth

Socks. Seriously. Socks. I got wool socks and slippery fuzzy socks and “If You Can Read This Bring Me Coffee” socks. And my feet would have been so cold otherwise. But now they are both warm and funny. Before that, I only had running socks, not great for the hospital or Minnesota winter.

Softest blanket in the world. Softest anything in the world. Don’t worry about color or style. One of my best friends sent me a red and white blanket and what I see when I snuggle up with it (literally every time I sleep or sit ever since surgery), I only see her, our friendship, and her care for me. Of course the color is beautiful because she is awesome and has good taste.

Cute and comfortable clothes that fit around their particular cancer. Shirts or sweaters with low, open necks for head or neck cancers, that easily pull over their heads or are button up so they don’t have to pull them on at all.

Slouchy pants. For the hospital, for after, for looking relaxed but stylish, with pants that are easy to pull on and off if they are in pain, exhausted, or need to get them off right.now!

Ice packs or heating pads. These might be for the wound, if surgery. For the burning sensation after radiation, or for snuggling with during the wild roller coaster rides of hot flashes and chills.

Soul Food

Soup. Chicken noodle, chicken wild rice, tomato, black bean, tortilla soup…soup. Warm, easy to swallow, healthy, delicious. Homemade or from a restaurant or the deli section of a grocery store.

Chocolate. Any and all.

Mints. Something to suck on during waiting room periods or after bad tasting treatments or to counter the grossness of medicines.

Gift card to Trader Joe’s or Whole Foods. Some kinds of chemo or radiation (or my treatment: RAI radioactive iodine) can affect taste buds. Either by burning them, swelling them, or just changing them. I threw out a cup of coffee one day because it tasted like burned metal. Made a second cup, from the same beans, and it tasted great. Weird. So a gift card enables the patient to get what might taste right that day to their weird taste buds.

Beauty and Humanity

Pedicure or manicure. Also, pretty nail polish, again a gift idea for people like me, who don’t have a lot of disposable cash. Or, ask if you can give them a pedicure or manicure yourself.

Do their makeup, or hold up a mirror so they can do it. Especially if they are in the hospital for a few days. The first day I put on makeup (and I am an extreme minimalist in terms of beauty products), I felt my morale swing upwards.

Lotion. Skin dries out from treatments, cold, surgery.

Essential oils. My doctor even had some for me to put on my surgical gown. Hospitals and sick rooms smell gross. This can really pick up the mood.

Cute headbands, scarves or hats. Even if they haven’t lost their hair, or won’t, they might be cold if they’re in the hospital for a while, or just want to feel pretty while their face is puffy and their scars heal. There are a lot of cute ones out there.

Hair appointment. Depending, this one is sensitive, I know, so check in on how they are feeling and doing with their hair. My kind of cancer and treatment (most likely) does not affect hair. Maybe a hair cut or color, maybe just a fun up-do.

Time out together, or in their home or hospital room when you don’t talk about cancer. I’m so thankful that I got to participate in my soon-to-be new sister-in-law’s wedding dress appointment and cake tasting. I was exhausted and have foggy memories of these events as they were three days post-surgery, but I’m so glad I could participate and feel human and also celebrate and focus on someone else for a while (she’s awesome, way to go, Kevin!). A friend had to drive me to these events, and wait for me, and drive me back. What service and practical love that showed me.

Entertainment

Movies—even a list of suggested titles, no need to spend a lot of money. Chemo brain fog or post surgery exhaustion makes it hard to make decisions or even remember things, like what we were watching before.

Puzzles. I do puzzles as mindless, relaxing therapy. In fact, I wrote about just this thing for The New York Times. A friend sat with me, three days post-surgery, and we did a hot air balloon puzzle as long as I could stay sitting up. We talked and I felt like I wasn’t utterly boring to her, and also that I had been mildly productive.

Books. Audio or print or digital.

Or gift cards for these things.

Stress Relief

Tea. Chamomile, turmeric, lemon ginger, apple cinnamon, vanilla…

Sleep mask.

Massage. A gift card or just give them one when you visit. Again, this isn’t about big money. You’re visiting, that’s awesome. Rub their feet or their hands or their shoulders. Post-surgery, my upper back ached like crazy, from the position my head had been in during surgery.

Coffee mug with an appropriately funny message. I put this under stress relief because—it relieves stress. My sister sent me my own “Cancer Sucks” mug and when I drink from it, it gives me a little reminder that yeah, this is hard. Coffee (or tea or hot chocolate) is also delicious. It tells me to enjoy the deliciousness in the midst of the sucky thing. In other words, to fight for joy and to be thankful.

Something for their spouse and children. Babysitting, date night, something fun and not cancer related, a chance to be a kid or a man or a woman.

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And, I hope that whoever in your life has cancer will feel blessed, held, comforted, provided for, and loved. And that, you, the caregiver and loved one also feel blessed, held, comforted, provided for, and loved.

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(This column originally appeared in Rachel Pieh Jones’s website and was republished here with her permission.)

Spiritual director and chaplain Tom Stella’s new book points us toward being ‘In Sync with the Sacred’

EDITOR’s NOTE: Regular readers of our online magazine know Tom Stella’s work from our coverage of his earlier books CPR for the Soul (here’s our 2018 column about that book) and Finding God Beyond Religion (here’s our 2013 column). After many years serving as a Catholic priest, Stella refocused his vocation as a spiritual counselor and chaplain to individuals and groups. As the years have passed, his concept of the Divine has grown beyond traditional religious boundary lines—even as his spiritual advice to us has become ever-more practical. Now in his 70s, Tom’s new book is 11 chapters packed with hard-earned wisdom with chapter-titles that include: Life Is Not a One-Piece Puzzle and We Are More Than Our Limp. With Tom’s permission we are sharing here an abridged version of one of the book’s richest chapters: Pain Is Inevitable—Suffering Is an Option. We urge you to order a copy of Tom’s book, please, and share it with friends.

Pain Is Inevitable, Suffering Is an Option

By TOM STELLA
An abridged version of Chapter 5
from In Sync with the Sacred, Out of Step with the World

Click the cover to visit the book’s Amazon page.

“Life is difficult” is the first sentence of psychiatrist M. Scott Peck’s book The Road Less Traveled. This statement is both undeniably true and universally experienced. Along with being wonderful, exciting, fulfilling and gratifying, life is also difficult. Life can be challenging and exasperating. More often than not, life tries our patience and tests our faith. Whether we’re talking about physical, mental, emotional or spiritual matters, life can be unfair, maddening and heartbreaking. Life is difficult, and pain is inevitable.

The generally accepted understanding of suffering is that it is pain on steroids. When we say someone suffers from migraines, cancer, Alzheimer’s or depression, we usually mean their pain is intense, prolonged and possibly chronic. However, when I use the word suffer here, I’m not referring to pain writ large, but to its meaning in the Latin sufferre, which means to “bear up” or “to endure.” Suffering in this sense refers to how we carry our pain. We can resist the reality of our pain and resent its causes and consequences, or we can embrace it.

Pain may be inevitable, but we can choose how we deal with it; we can do so grudgingly or gracefully, though I know the latter is a bit of a stretch. As a hospital and hospice chaplain, I have witnessed both kinds of suffering in patients who experience physical pain. Some carry their pain with dignity, not denying or minimizing it, and not allowing it to sour their attitude or the manner in which they relate to medical staff, or to their family and friends. Others, some of whom are actually in less acute pain, both resist and resent their condition thus becoming a pain to themselves and to others.

As a priest, counsellor and spiritual director, I have also observed the different ways people deal with non-somatic pain. The distress of loss and loneliness is no picnic. A heartache is every bit as real as a headache. The spiritual pain known as the “dark night of the soul” is a dis-ease as palpable as any other.

In all of these situations, it can be a good thing to express one’s anger and frustration at no longer feeling whole and healthy, but some turn this phase of the grieving process into a lifestyle. People can become identified with their pain; they become their anger and, as a result, they end up being bitter. Others, those who carry their pain well, allow it to teach them about life and about their need to rely on other people, and maybe also on a Higher/Inner Power.

ATTITUDE AND FAITH

Tom Stella

What makes it possible to accept our pain rather than rail against it? What gives us the courage to maintain a positive attitude in the face of physical, emotional or spiritual pain? For a great many people, faith can be a difference maker. For some people, it is the traditional religious belief that those who experience pain and sorrow now will be rewarded in the life to come. Whether this is true or even good theology is debatable, but this belief can give meaning to a life of pain which, in turn, can help make it bearable. Those who hold to this conviction often point to the Beatitudes for biblical confirmation: “Blessed are those who mourn, for they shall be comforted.” (Matthew 5:4)

But there is another expression of faith that can result in the same ability to suffer well the pain tha comes our way. This faith has nothing to do with an afterlife, but everything to do with the rewards of living with integrity here and now. This kind of faith is not about believing in a ‘just’ God, or in some sort of quid pro quo exchange of present pain for future bliss. Rather, I am speaking of faith as a conviction that our deepest pain has the potential, the power, to bring new life.

The acceptance of pain I am describing is not masochism; it does not mean we would rather know pain than pleasure, or sorrow than joy. Facing pain means we are open to experiencing everything that being wedded to the world entails, the good times and the bad, the easy times and the difficult times.

Novelist and social critic James Baldwin says, “Not everything that is faced can be changed, but nothing can be changed until it is faced.” Whether or not painful circumstances can be changed, our best option is to move toward our pain. Try to relax into the bodily ache. Confront the discomfort of a strained relationship. Sit still in the abyss of loneliness. Allow the doubt and the darkness that blankets the soul from time to time to have its day. It is amazing how pain, though still present, becomes more tolerable when we suffer it well.

A friend once told me that, in his experience, although pain that is embraced doesn’t go away, “something shifts.” He couldn’t describe the “something,” and he couldn’t pinpoint exactly what he meant by the word “shifts,” but he was clear that when he stopped resisting the pain it became less painful and easier to bear.

SUFFERING THE PAIN OF OTHERS

How we choose to suffer our own pain makes it more or less difficult to bear. But we also have an option when it comes to dealing with the pain of others. We can attempt to cure them, or we can attempt to care for them; that is, we can accompany them in their suffering. Of course, this may not be an either/or matter—but we can be caring at the same time that we administer healing balms, physical or otherwise.

When a cure is not possible, however, when there is no hope for recovery in sight, when everything that can be done has been done to alleviate pain and to facilitate health, there is still another option that can be helpful—this is the way of compassion.

From the Latin cum pati, compassion means “to suffer with.” When we are truly present to those who are in pain, when we don’t try to minimize or spiritualize what they are feeling but instead acknowledge the fear and anger that often arise in the face of hopelessness, helplessness and distress, our understanding and willingness to share their pain can be transformative. It has been said that shared joy is increased, and shared pain is lessened Sharing the pain of others can lighten their load and enable them to suffer it more gracefully, for they then have the consoling and sustaining realization that they are not alone.

It is nothing less than courageous to accompany a person in the midst of pain that cannot be cured. Caregivers who attend to the needs of the seriously or terminally ill often do so at the cost of their own health. They also do so at the cost of their convenience. I witnessed this first-hand as my mother cared for my father in the last years of his life, and as my sister cared for our dying mother. Caring for another is a grueling experience physically and emotionally, but the rewards are worth the cost, for we usually receive more than we give—a truth that is often realized only in retrospect.

“Shit happens” is a not-so-delicate way of saying life is difficult. But in the midst of life’s travails there is a way to navigate that makes pain bearable; we can choose to suffer it. We respond to the sacred whenever we choose this path; and, whenever we embrace life’s difficult times with faith, we discover that they are often the font from which comes new life.

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Zohaib Begg: ‘A lot of people could learn from that 8 year old in finding solutions.’

WASHINGTON DC—Describing Zohaib Begg’s service to needy neighbors in Washington D.C. as “compassion from an unexpected source,” CBS News broadcast this 90-second story that inspired families nationwide.

At another point in the report, we hear, “A lot of people could learn from that 8 year old in finding solutions.”

We are streaming this video in our We Are Caregivers section to remind everyone that caregiving has no age limit.

As the CBS correspondent reports: “In the shadow of a symbol of American accomplishment sits a park lined with tents that most in the nation’s capitol ignore—but not 8-year-old Zohaib Begg. The Virginia third grader is handing out donated meals and care packages of socks, masks and toiletries.”

And this is not the first time the nation has heard of Zohaib’s selfless work on community caregiving.

Zhoaib is the grandson of our author Victor Begg. You can learn much more about Zohaib’s family by reading Victor’s book, Our Muslim Neighbors.

Here is the CBS News video about Zohaib Begg

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To learn even more about this CBS story, visit the CBS News website, which has both the video and a full-text story about it.

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